Hospice: The End Can Be as Beautiful as the Beginning

By Rebecca Malcolm Schubert, Jean Bayview and Diane M. Jardine Bruce

This book is a selection of a chaplain's experiences of how hospice can serve the families and patients who enter this special journey. It contains patient stories told from the chaplain's view. When Chaplain Beck is with patients, she often shares one of her stories to help ease their fears. It is her hope that sharing these stories in this book will prepare readers and lessen their anxiety when hearing the word "hospice" in relation to themselves or a loved one. Experiencing these holy moments may even help on one's own spiritual journey.

Hospice does not mean death is imminent, but rather it is a transition of care that focuses on the patient's physical, emotional, and spiritual needs as they approach the end of life, which may be days or months away. From Schubert's first visit made as a chaplain resident to her last day thirty years later as a hospice chaplain, she has been honored to serve the dying and their loved ones. She hopes that readers will hear the love and grace and see that through hospice, the end can be as beautiful as the beginning.

• Language: English
• Publisher: Resource Publications
• Release date: Sep 7, 2023
• ISBN: 9781666782486

Rebecca Malcolm Schubert

Rebecca Malcolm Schubert has been serving as a “death and dying” chaplain since her ordination as an Episcopal deacon in 1995. As Bob’s wife, the mother of four, and grandmother of nine, she has had a full life.

Book preview

Introduction

Dear Reader,

Why this book? Right from the start of this little book I need you to know it is my deepest belief that there is one God and there are many paths to Him. My path is my path. Your path is your path. I honor your path and I pray you honor mine. My goal is to serve daily every spirit God puts in my path. But you must also know I am very human, and I am a forgiven woman. First and foremost, I am a child of God. I am my husband’s wife and the mother of our four wonderful children and grandmother of nine beautiful spirits.

Most of my ministry has been as a hospice chaplain (or a death and dying chaplain) starting about eighteen months before my ordination, which was February 4, 1995. My ordination is in the Episcopal Church as a deacon. In the Episcopal Church the ordination service calls the deacon into the world to serve. Within the service of ordination of deacons, read from the Episcopal Book of Common Prayer, there are two passages I will never forget. First, "You are to make Christ and His redemptive love known, by your word and example, to those among whom you live, and work, and worship. You are to interpret to the Church the needs, concerns, and hopes of the world."¹ The second is, At all times, your life and teaching are to show Christ’s people that in serving the helpless they are serving Christ himself.²

I took the words of the service of ordination seriously and went into the world to live out my call to ministry as a hospice chaplain. Never in my life have I run so fast toward anything or anyone as I ran toward my husband and chaplaincy (once I got started). As I reflect, all my life experiences have led to this path, from the call I felt as a teenager to my embarking on a second career as a chaplain. It is a blessing to be with families and their loved ones as they start the great adventure into eternity. As a hospice chaplain, I view myself as a midwife to the spirit! I believe the birthing of the human spirit into eternity is as holy as the birthing of a baby into this world. I have written a booklet about the similarity, titled The Birthing of the Spirit. The human spirit is the essence of who you are, with all your experiences, hurtful and wonderful, rolled into one sacred life. No matter one’s age, spirituality, or religion, all lives are to be honored.

When the physician or nurse practitioner shares with a family or patient that it is time to call hospice, the patient’s (and the family’s) level of fear automatically takes a giant leap forward. It is true that no one wants to die. And depending on the age of the patient, one can believe there is more to do on this earth. However, I have found many times the spirit of the patient is ready to let go, even if one does not feel ready. It is so important to listen to the patient. The patient speaks in many ways and sometimes with words. A chaplain watches the patient’s eyes, and what the body language is saying, and listens to what they are hearing from the patient and what the family is observing. A chaplain can then provide focus on the patient’s needs, not the chaplain’s needs. This focus on the patient is paramount to me as a chaplain.

In this book you will find patient stories from the chaplain’s view. These are shared observations from my experiences as a chaplain. While my experience was not fiction, I have taken care to change the story details to protect the experience of those I had the honor of meeting. Some experiences have been combined and others have been changed in different ways to convey the hospice lessons I wish to share with you. Any resemblance to actual events or locales or persons, living or dead, is entirely coincidental.

Why share these stories? When I am with patients, I often share one of my stories with the hope it might help ease their fears. It is my hope that sharing these stories through this book will prepare you and lessen your anxiety when you hear the word hospice in relation to yourself or a loved one. And I hope you will remember that hospice strives for no one to die alone; no one to ever die in pain; for the patient to have control of their death (to the extent possible); and for loved ones to be welcome into the sacred space of the dying patient, if that is what the dying patient wants. Also, to know that hospice does not mean death is imminent but rather a transition of care that focuses on the patient’s physical, emotional, and spiritual needs as they approach the end of life, which may be days or months.

The end can be as beautiful as the beginning. I have no idea what heaven is like. But I have an idea of what I think heaven is not. I am positive there is a next level of spiritual existence. Death is not to be feared but rather embraced as a holy experience of our spirit being welcomed into eternity. When reflecting on my own death, I am reminded of a question from a 2014 TedTalk where David Brooks asked, Should you live for your resume . . . or your eulogy?

Thank you for taking this journey with me. We are going to experience positive patient deaths together in this book. But, being realistic, there have been sad deaths too. I have included several of these deaths because sin is an equal opportunity employer. Some find saying, I am sorry or owning their sin is very hard, so they never acknowledge their faults. Others find confession is a door to a peaceful death and a walk into eternity.

1

. Episcopal Church, Book of Common Prayer,

543

.

2

. Episcopal Church, Book of Common Prayer,

543

.

Chapter 1

The Gift of Presence

Presence is a very important part of who we are. When I use this word, some might immediately think about physical appearance. The definition of presence I would like to discuss, though, is best defined as the quiet essence of a person who is just being. This is the spiritual self in each of us that, when in a comfortable space, shines through our eyes and face and can be heard in the inflection of our voice. On the other hand, presence is part of us that is hidden deep inside and is not available when we become anxious or nervous.

Another word for presence is hospitality. Henri J. M. Nouwen notes in his book Reaching Out that real hospitality is not exclusive but inclusive and creates space for a large variety of human experiences.¹ I invite you to make the space that surrounds you as hospitable to your friends as the space in your home. Being accepting of others where they are, and not where you would like them to be, is true hospitality. Being hospitable and open to others is the heart and spirit of the gift of presence. As we start the discussion of presence, it is important to remember that acceptance and agreement are not interchangeable words.

So many times I have been asked, What can I do to support a friend going through a crisis? What should I say when I see the friend? Please note the pronoun I. When a friend is in a crisis, and in need of emotional and spiritual support, it is important to realize that the friend’s crisis is not about us. It is about the friend!

By our very human nature, it is natural for us to focus inward, making ourselves the center of attention. Please consider a new approach: The friend in need is to become the center of the spiritual energy. The person in need, by the nature of the situation, becomes the one on a journey, and we become the invited guest. As a friend, we bring the gift of quiet presence, available to listen and to sit quietly. In this situation, there is no need to share our story or to make our entrance one of note. Presence puts the one in need at the center.

When talking about the gift of presence, I once heard an older chaplain explain how, years ago, he had received a thank-you letter from a family he had been with in the emergency room. Over a long day he had to make several visits to the family as they kept their vigil. They thanked him for the comforting words and the profound wisdom he had shared. He marveled at their comments because he said, All I did was introduce myself and ask the family, ‘What may I do to support you?’ This family had received the gift of presence.

It is a hard gift to give! It is much easier for us, in our humanness, to talk about ourselves and not to listen. But people in need don’t need us to do; they need us to be. Fight the overwhelming desire to share your story. Listen to their story with all your senses. Don’t make any big pronouncements as to how things should be resolved but allow them to talk until they answer their own questions.

This is the true gift of presence—one that cannot be purchased and wrapped in beautiful paper. The gift of presence is a spiritual offering directly from the heart—a true treasure.

1

. Nouwen, Reaching Out,

106

.

Chapter 2

The Teacher

The completion of my bachelor’s degree was in sight and the only thing standing in the way was a six-week math class. The course was scheduled to meet every day, Monday through Friday, for ninety minutes with one break. To the university, this course was basic mathematics. To me, it might as well have been called bonehead math, since even in its approach to the basics, it made no sense to me. Through my dyslexic eyes, math is a combination of numbers and characters that have been twisted and turned, made indiscernible as you apply needless rules and theorems. Spirituality, unlike math, is crystal clear for me because it is the essence of a person.

On the first day of class, the head of the math department introduced himself at the front of the room. He appeared tired and grumpy, a real curmudgeon. The strong cologne of cigarette smoke encapsulated his disheveled presence. He seemed past caring about looks and much more interested in the position of decimal points. With indifference, he announced he would be teaching this course. The other students and I looked around at each other, slightly puzzled at why the head of the department would lead math for dummies. This was the sort of class a new assistant professor or teaching assistant would teach. He curtly announced he was retiring, and his intention was to end his tenure with the first class he taught when joining the department many years prior.

The lessons and the weeks slogged on. Math was already a difficult subject for me, a dyslexic, and the course was even more difficult than I could have imagined. The professor barely spoke outside the lessons, and he was routinely terse and, as I said, a curmudgeon. He never gave support or guidance in class. During our breaks each day, he would stand alone off to the side smoking. I did my best to focus on a passing grade, though his cues led me to believe all of us were failing the course miserably.

A few weeks into the course, the professor went around the room asking each of us what it was we were planning to do following the completion of our studies. I shared that I was on the ordination track in the Episcopal Church and my next step was training at a nearby medical center. The professor nearly laughed out loud, and I could feel everyone around me pulling away emotionally. I could sense their breath being held for fear of being too close to the chaplain. From that moment on, no one wanted to talk at break with the religious lady. I grew accustomed to sitting alone during breaks. I found a nice spot to sit on a stone wall outside the building that offered a peaceful, shady, and semiprivate time.

We were nearly at the end of the course schedule, and it was a typical day. We had just started a scheduled break and I headed outside, anxious for fresh air and a few precious moments to myself. I had just settled into a seat on the stone wall when I noticed the professor was quickly approaching me. I remember being nervous as he sat down next to me. I remember asking myself what I could have done. Abruptly, he asked me if I was really going to be a chaplain. I nodded and responded that this was indeed my plan. He said he had a story he wanted to tell me, and he wanted my opinion. He insisted that I was not to share this story with any of my classmates and waited for my acknowledgment. As I nodded my head, I could not help reflecting on the fact that I had not yet been ordained and was not yet a chaplain. I wondered why he was choosing to confide in me.

He shared that a few weeks prior to the start of this course he had been diagnosed with stage IV lung cancer and was given four months to live. Leading up to his diagnosis, he had been admitted to a local hospital for a lung biopsy and had to stay overnight. Following the morning test, he was assigned to a private room. After the nurse got him settled, she informed him the doctor and the residents would be around with the biopsy results later in the day, likely after dinner. As he waited alone, he pined for his cigarettes. Minutes turned into hours, and soon it was evening. The doctor and his residents finally came into his room. The doctor quickly reviewed his notes and unceremoniously informed him he had terminal lung cancer and, at the current rate of development, had four months left to live. The doctor ended by asking if he had any questions. The professor said he was dumbfounded and shocked at the news. He could not think of a single question or comment. All he could say was, No. The doctor and his residents turned and left the room, closing the door behind them.

Not one person came into his room until breakfast arrived the next morning. He shared that he had never felt so alone, isolated, and lost with his thoughts, fears, and emotional pain. He kept thinking the nurses and other care team members had to know the diagnosis he had just received. He wondered why they had not checked on him or asked if he wanted to talk to a chaplain. He knew he would have declined a chaplain visit but admitted that later he would have changed his mind and asked for a visit. He gravely ended his story and asked me to make him a promise. He made me promise that, as a chaplain, I would never let this happen to another person. I prayed I would never let this happen to any patient on a hospital